A total of 70 individuals consented to be approached for follow-up contact. Of these, 56 were contacted to request participation in the present study. We were unable to reach 10 participants and 11 refused to participate, reporting a lack of time or interest as reasons for refusal. We conducted 29 interviews with consent from six males and 23 females; 20 participants were HC clients and nine were caregivers. Home care clients whose perceptions are reported in this paper were aged 51 years to 98 years with a mean of 78 years. 19 interviews were from Ontario, four from Newfoundland, and six from British Columbia. Five themes emerged from the thematic analysis: self-care trajectory and responsibility, learning and behaviour change, connection to care provider, connection to information and the health system, and connection through emotional support and caring. Representative quotes are included below with pseudonyms for participants and were classified as ‘C’ for HC clients and ‘CG’ for caregivers, and as one, two or three in accordance with the study site. Supplemental quotes are provided in Table 1.
Self-care Trajectory and Responsibility
Participants described their experience with the DIVERT-CARE intervention within the context of self-care and their journey managing chronic disease symptoms and treatment. We asked how managing their care had changed following the provision of health education and support in their home. Many described this change by first elaborating on their experiences caring for themselves over the course of their disease, including perceived capabilities, feelings, and uncertainties. Several HC clients and caregivers acknowledged a lack of confidence in their ability to provide self-care.
‘Well see, another bad mistake with a lot of people, and I was like, feelin' guilty of that myself, you think you know all of it. But never be afraid to find out more because, ya know, there's times over the years, not in the last couple of years, but over the years since 1996, there’s things that I’ve been doing that I’m not doing it right. Like I thought I was doing it right’ Bob (C, 1)
The daily toll and responsibility of caring for one-self and navigating changes in health were likened to feelings of burden. Common daily symptoms that were reported included shortness of breath, and edema, most often seen in the lower extremities. Some participants highlighted that shortness of breath seemed difficult to manage and lacked distinct features where actions should or could be taken. For instance, one respondent described that their bucket was full, giving a sense that they were overwhelmed with ongoing monitoring and self-care responsibilities. An inability to alleviate symptoms was common among participants and evoked feelings of fear, uncertainty, and inaction.
‘I have shortness of breath again and I have my feet are swollen. I never thought nothing of it because of the fact that I've always had this shortness of breath, right?...So, anyway, I'm diagnosed with that now, so I don't know what's- what's going to be next. My bucket is almost full.’ Keith (C, 3)
‘It scares the hell out of me sometimes. Yeah, I get really scared and then I just, I think – what am I going to do, like what am I going to do? And – I’m not going to treat this anymore because it is too much, and uh, like, I can’t breathe [crying]...Not everything, but maybe one of the most important things, you forget. ‘Oh God’, you know? What am I going to do? What should I do? I forget, I can’t remember.’ Lori (C, 1)
Many reported concerns about the impact that their care was having on the lives of their families, and that they desired to take sole responsibility for their care. To illustrate, Jim (C, 1) shared that his ‘kids are married, they have kids and grandkids and you know. I don’t want to become a burden, as far as their lives are concerned.’ There seemed to be a hesitancy to rely on others, and a clear desire for more information.
Learning, Changing Behaviour, and Confidence
The second theme arose from descriptions and perceptions of self-care during the course of the DIVERT-CARE intervention. Participants were asked a series of questions for each of the components of the intervention, prompted by an examination of the influence that the intervention component had on daily care management. Most described they learned something new about their medical condition, medications, and managing symptoms. Several elaborated further on the strategies they used to monitor their condition, their increased interest in their own care, and using the zones decision aids.
Karla (CG, 1) articulated her increase in awareness over her condition: ‘I would have to say it would open up my eyes an awful lot of different things … it made me more… attentive and… being more aware and to watch for certain things… which was a real good thing because I had no idea, ya know?’ Similarly, Joanne (CG, 3) noticed a change in Keith’s (C, 3) attitude towards his health: ‘it seems like if you’re talking about anything, uh, about his health or anything, like he’s right in there, he wants to talk about it, whereas before he was kind of like he would shy away from that conversation type of thing.’
Some respondents described knowledge that they had learned, and were able to teach-back the content as noted by one participant describing inhaler utilization:
‘I'm pretty well set up. I was to use it twice a day. To keep the little, um, alveoli or whatever call it open; the little sacks in your lung. Keep them open and I don't use it as often now because I don't really… It does help if I have a lot of mucus.’ Elizabeth (C, 2)
For some, the information they received was new, and the majority reported gaining knowledge on how their medications worked and strategies to manage symptoms of dyspnea and edema. However, there was one exception where a HC client had previously participated in education for COPD. He articulated new knowledge regarding the transient nature of chronic diseases and a new awareness of functional impairment.
‘Obviously with emphysema and COPD it's not likely to improve, but it's very nice if you can get it stabilized so it doesn't deteriorate. That's right. I was very well informed. You know, right now I'm down and... you know, it fluctuates a bit around 35% lung capacity which, you know, as long as they don't over exert myself in high humidity or even at any other... I notice I have limitations, but I know what they are, and I know what to do when I've reached them so.’ Mark (C, 1).
We found an overarching theme woven throughout the participant’s interviews, which was a feeling of connection. These findings are presented with three sub-themes: pre-emptive connection, connected to information and medical advice, and connection through the therapeutic relationship.
Pre-emptive Connection to DIVERT-CARE Professionals
HC clients and caregivers in the study reported a feeling of security and connection, which was expressed as continuity and initiation on the part of the care provider. A recurring statement across interviews was appreciation for consistent follow-up regarding health status, whether via an in-home or phone visit.
‘It was nice to have her come in and… just to check the heart and lungs, and make sure the medications were okay and so on. We’re just grateful that someone was coming in and that someone was available if we needed them!’ Paul (C, 1)
The importance of follow-up on timing to diagnosis and intervention was best illustrated in the case of Keith, as told by his caregiver:
‘And-and she-she comes in every couple of weeks or so, check it all out and she was floored that his pulse and everything was so low. But I feel like you don't know. What if she didn't come in? It was the perfect time. And God love her. Like if it wasn't for her coming in and doing that, we wouldn't have known that like, you know, he's always had a little bit of issue with his pulse and stuff, but not down in the 30s and that. And with her helping me with that, we tried to figure things out. She got a hold of the doctor about it. They made, um, then the doctor made an appointment with us. He went in, uh, and he ended up getting, uh, a pacemaker put in.’ Joanne (CG, 3).
One exception to this theme occurred when additional services were coming into the home. Maureen (P, 2) expressed that a high frequency of visits led her to book visit-free periods so she could have ‘a couple of days to [her]self’. The multitude of visits in this case was perceived as a ‘nuisance’ and not productive.
Connected to Information and Medical Advice
Over the course of the interviews, many referred to the provided resources, such as the zones decision aid and client education booklets. Participants described scenarios where their health care provider reviewed information and contextualized it to their reality.
‘I got heart failure zones and I’ve got uh, private community services. I do have that big book that we all got, that health thing that tells you what to do in case of stuff. That big thick one. Remember we got that, who to call and everything, and I look, I refer to that once in a while.’ Ellen (C, 2).
However, many reported requiring additional support to digest the information in order to use the information independently. When time was spent reviewing the information and verifying understanding, participants had more confidence in decision-making.
‘But I think it was certainly beneficial to have someone that I could discuss my concerns with, such as just giving me an explanation. I know at the time I found it kind of strange that I was on a diuretic and at the same time I was also on a medication to control the frequency of my bladder. I thought, you know, seems to me like you know these two things are working in opposition.’ Jim (C, 1).
The provision of a medication reconciliation by pharmacists, and reinforced by nursing staff, was also reported to be beneficial. Lori (C, 1) stated, ‘I don’t think I would’ve been off as much medication as I am now without all the help I got to do it.’
Connection through Therapeutic Relationships
The final sub-theme is best described as the emotional connection to the DIVERT-CARE health care provider. Regular visits that occurred over an extended period facilitated therapeutic relationships, and in some cases an emotional bond. Participants expressed that they were satisfied with the program and the health care professionals involved in delivering the intervention components. Words commonly used to describe their interactions included ‘comfort’, ‘caring’, and ‘understanding’.
‘She was good. She was really good, I must say’. Keith (C, 3)
‘It was, well I would say a comfort. It was, yeah. It was a [pause]. You know, I think we’re blessed to have the care that we get.’ Carol (CG, 1).
Participants felt an attachment expressing that they looked forward to the visits and felt comfortable having candid conversations to discuss their cares and concerns. Even participants, like Mark (C, 1), who did not feel like they needed a lot of support expressed that the intervention was mutually beneficial: ‘There was nothing I didn’t like. It worked alright for me. Anyway, you know, I’m not sorry I went through it, it gave them some insight.’ The burden of self-care was apparent, and the gratitude shown by the participants demonstrated the utility and benefits drawn from this intervention. As eloquently summarized by John (CG, 1), ‘She treated mom like a person. Not a number’.